In Loving Memory
This time of year brings with it much heartache for many people, I have had many letters over the past few weeks from people who have lost someone through addiction, be it alcohol or drugs. There appears to be an overwhelming sense of guilt in relation to the inability to stop or prevent someone you love going that one step too deep. So for this reason I have invited a colleague of mine Mr Thomas O'Brien to draw on his expertise as Task Force Coordinator to try to clarify and bring some sense of understanding to some very difficult concepts. He writes:
Addiction is a rising problem in Irish society. Many think of addiction in relation to illicit drug misuse; however, compulsive behaviour which is one major root of addiction, brings with it problems ranging from compulsive shopping, gambling, sex, computer games, alcohol abuse and drug misuse. Obviously, all of these addictions cause devastation from a social point of view, in that when time is consumed by an individual investing in their addiction, family members, friends and significant others suffer. Suffering is not something that exists on its own. Although it has been argued to be so, it appears to be the case that suffering and pain are each individuals response to their unique situation. Unique, because each persons experience will be an individual one.
Addiction causes the individual to withdraw from society, choosing to concentrate on the habit, becoming ignorant of the adverse effects taking place within the family unit, circle of friends and community. Most addictions come with heavy financial costs too. Drugs, alcohol, gambling, and drugs cost money. The more entrenched a person becomes in their addiction, the more he/she needs to feed their habit and feel satisfied. Debts build, lies are told and soon costs cannot be hidden.
Why does addiction need to be considered when discussing bereavement and loss? There are many instances where addictions lead to loss. Health risks include Hepatitis, HIV, accidental overdose, suicide and nutritional deficits. Alcohol ranks high as a root cause at the heart of many road traffic deaths, liver failure and in some cases criminal damage or domestic abuse. These few examples can cause chaos for the addicted individual, but also, they have the potential to tear families apart. When discussing death and loss, addiction does not seem to be high on the agenda. The many factors associated with addiction and the impact addiction has on others is often overlooked. Drug misuse does not just happen. It is usually a reaction to a number of significant events occurring in an individual's life. No matter the cause or situation, death is inevitable, and this inevitability determines how we look at life and how we deal with the loss of a loved one. Only when we know our feelings can we respect our unique reactions. Elisabeth Kubler Ross once wrote“ Guilt is perhaps the most painful companion of death” To try to move forward from guilt in relation to loss can stir a plethora of emotion. Many feel they don't have the right to move forward but healing takes time and this only becomes clear when we allow ourselves to express our feelings and admit it is alright to feel as we do.
There are a number of supports out there so please, if you have been affected by any of the issues discussed, know that you are not alone and ask for help.
Samaritans :1850 60 90 90
Console : info@console.ie
www.dnedrugstaskforce.ie
www.freetobeme.ie (youth specific)
This week has seen people far and wide join together for Irelands biggest coffee morning in a joint effort to raise invaluable funds for hospice care throughout the country. So for this reason I have decided to give a brief explanation as to what Palliative Care/Hospice Care is.
Palliative Care is an approach that enhances the quality of life of the patient and family who encounter life threatening illness, by providing them with physical, spiritual and psychosocial support from diagnosis to end of life and bereavement (World Health Organisation, 2003).
For children Palliative Care represents a very special and closely related field to adult Palliative Care (WHO, 1998). It encompasses many elements of supportive care incorporating all services both generalist and specialist. The terms Hospice/Palliative care are often used interchangeably.
Throughout the tapestry of life, death is the one certainty we shall all encounter, how we deal with it depends on our relationships and understanding of this very complex area. Most importantly Palliative Care affirms life and regards death as a normal process and seeks to neither hasten nor postpone death. Dame Cecily Saunders founder of the modern hospice movement, has been one of, if not the most influential figures of our time and devoted her life to raising awareness and improving standards through provision of care for our patients. Her vision was to value the uniqueness and individuality of each person no matter the stage or trajectory of their illness.
The focus of Palliative Care is on quality of life of the living offering a support system to help the patients live as actively and creatively as possible. It is primarily individualised patient care that extends to the patients family and friends.
Hospice care seeks to relieve the physical symptoms of illness while equally addressing the patient's emotional, spiritual and psychosocial needs.
Today in Ireland there are nine such hospice units: three in the Dublin area; one in Co. Kildare; one in Co Limerick; one in Cork; one in Galway; one in Sligo and one in Donegal - but more are needed.
The Irish Hospice Foundation is a non profit organisation that promotes the hospice philosophy and supports the development of palliative care. Their vision is that no one should have to face death or bereavement without appropriate care and support. Their provision of service extends to education and training, advocacy, development and support. They can be contacted at info.hospice-foundation.ie
‘You matter because you are you, you matter until the last days of your life and we will do all we can not only to help you die peacefully but to live until you die’
(Cecily Saunders 2000)
Dear Alyson,
My sister in law has motor neurone disease and lives in America. She told me she has made an advance directive regarding her future treatment. I didn’t like to ask what this meant and I wondered if you could provide some clarity for me please?
Advance care directives appear to be the future in patient decision making and are sometimes known as Living Wills. At present there is no legislation on advance care directives in Ireland. Under Irish law the need to obtain consent to treatment is derived from the patients constitutional rights to decide, regarding life, health and body integrity. For example a competent terminally ill patient is entitled to require that life support systems be withdrawn or not as the case may be.
Some patients however express their wishes in advance of a situation arising where they may become incompetent through the trajectory of their illness, expressions known as advance directives. The aim of advance directives is to increase individual autonomy. In America there are two kinds of advance directives recognised by the law, which have been implemented successfully, one of which your sister in law may have incorporated in her care.
A Living Will - Gives instructions about what kind of medical treatment a person wants, or does not want, should they become unconscious or unable to make decisions for him/herself.
Health Care Power of Attorney - In this document a patient designates a surrogate if the patient is unable to make their own medical decisions for one reason or another.
Here in Ireland, while you may recommend to your doctor that a certain person’s wishes be taken into account, you cannot legally give anyone the right to make decisions on your behalf. According to the Citizens Information Board, given the fact there is no legislation addressing directives in Ireland, this doesn’t necessarily mean that they are not valid here. but that there status is unclear.
Decision making in healthcare has legal and ethical implications no matter how big or small the decision, and unfortunately this is not my area of expertise, however the Citizens Information Board have compiled a very comprehensive explanation of advance directives which I‘m sure will answer any further queries you may have. They can be contacted at www.citizensinformation.ie
Dear Alyson,
My friend’s sister died by suicide six months ago, and she is not coping well at all, she doesn’t even sleep any more and spends her time going over and over the events surrounding the death. She blames herself as her sister went to see her that day and gave her a photo of the two of them. She feels now that she may have missed a hidden sign that something was wrong. My problem is that I don’t know what to be saying or how to help her.
As with any sudden death , there is no time to say goodbye. Initially people feel shock and total disbelief, but the fact the person took her own life increases the intensity of the grieving process. In addition to the ‘normal’ grief felt when some close to us dies, your friends grief may be compounded by intense feelings of anger, guilt, regret and self blame. It is important to remember that for survivors of suicide of a loved one the grief process is much more complicated and intense than any other death. Feelings experienced may often be intensified by a relentless search to find meaning and answers as to why someone felt this was their only option. Despite the intensity to find answers, more often than not the literature and experiences of others suggests that suicide is an irrational act and perhaps the victim was choosing not to die but to end the emotional turmoil they felt. Unfortunately there may never be a rational answer. When the death of a loved one is so untimely it is often harder to accept as reality or indeed that the loss is permanent.
Guilt and self blame are common feelings for the bereaved, as some people feel they are responsible and as a result blame themselves as in the case of your friend. This guilt can be heightened by the closeness of the relationship to the victim. As each suicide is individual so too is your friends reaction to it. No one can truly understand what she is feeling except someone who has experienced the same loss. She will experience much heartache and emotional turmoil but this is a time in her life that cannot be rushed or ignored. She will cope in her own time and in her own way.
In trying to help your friend, don’t feel like you have to say anything, often your presence and a comforting shoulder may be all your friend is ready for. Show her an unconditional support especially on the bad days when she may want to shout at someone. Don’t assume a time frame for your friends grief, surviving the loss of a loved one to suicide is a very long process and could take years, be patient. If you feel your friend is in a very dark place and is perhaps out of your capabilities to help her you may gently suggest she talk to a healthcare professional trained to help. Console is a Registered Charity supporting and helping people bereaved through suicide. They respect each individual’s unique journey through the grieving process following their tragic loss. They can be contacted at 1800 201 890 or info@console.ie
Dear Alyson,
I suffered a miscarriage two years ago and despite having a very supportive husband and family I cant stop thinking about my baby, I lost her at twenty three weeks. I have a little boy of four and he is the centre of our world but somehow I still feel this huge gap in my life and find myself wondering if I did something wrong. My friend feels I should be over it by now. What’s wrong?
Let me start by empathising with you. To suffer a miscarriage can be a profoundly traumatic experience. It brings with it an abundance of feelings from isolation to guilt. What you are feeling is perfectly normal for you, because there is no right or wrong way to grieve the loss of your baby. Take as much time as you need. It is normal for women who have suffered a miscarriage to wonder if they are somehow to blame for what has happened, but to reassure you, there is little evidence that miscarriage can be prevented by changing behaviour.
It is wonderful that you have your little boy to add some comfort to your situation but if you are finding it hard to cope from day to day because of your emotions, you may find it helpful to talk about your feelings with someone close or indeed someone outside of your environment with expertise in this area. The Miscarriage Association of Ireland (www.miscarriage.ie ) provide a great source of comfort and support by people who have all had experience of miscarriage.
Coping emotionally after a miscarriage is not easy because parents begin a psychological bond with their baby from very early on and have created hopes and dreams for that little life. Be mindful of the fact that your partner may also be grieving, try to be honest with each other and support each other through the bad days. He may be finding it difficult to express his emotions or relate to your loss because he has not had the same awareness of being pregnant and relating to a new life. Having said that, while his experience may have differed from yours his loss is equally as painful.
Friends and family try to be supportive in most situations however some people will constantly avoid talking with you about your loss, this is because they are in unfamiliar territory and don’t know what to say. Try to understand that people differ in their ability to provide support and encouragement and can appear inadvertently dismissive. Be assured that while it may not be what you want to hear, it may be the only way they know in trying to be there for you.
In the months after a miscarriage, some parents find it helpful to commemorate the loss of their baby, perhaps by holding a small memorial service, planting a tree or releasing a balloon into the sky. Whatever you choose to do, the memory of your baby will live on in your hearts forever. Grief takes time, you are not alone.
Dear Alyson
A few months ago my father in law was diagnosed with a terminal illness, and despite treatment we have been told there is nothing more that can be done. This has happened very quickly and I have not had a chance to tell my children anything because I do not know what to say. Should I tell them or should I protect them from what is really happening?
It is never easy to break bad news to children, but while it is a difficult and painful thing to do, not telling them will lead to confusion and fear. At present they may have little understanding of their reactions, or how to express what they feel, but how they cope with what is about to happen will depend on their personalities, their level of development and how they have been guided in the past. Children’s level of understanding will vary as they develop, and it may be difficult for you to understand what they are feeling, particularly smaller children. Try to prepare children sooner rather than later, but try not to give false expectations in an attempt to alleviate their pain. Children tend to ask questions throughout the course of everyday activities and conversations and then may change the subject abruptly when they have heard enough. Be guided by them and try not to give too much information at once.
For children to understand about death they need to know that dying is an event or a process, and it is important to help them separate facts from fantasy. Here are some points to think of which may be helpful
When breaking bad news to children it is important to ensure that the bearer of the news is someone known to them and who they trust, someone who can maintain contact with them in the future.
Try to provide a safe and familiar environment and convey a language that is easily understood and factual. Reply to questions in a straightforward, easily understood language. Be mindful to use words such as die or dying instead of 'going to sleep' or 'pass away' so as to avoid confusion.
Try to provide opportunity for the children to ask questions and show their emotional responses.
Be prepared for them to come back at a later stage with more questions in response to the first ones.
Allow the children to spend time with their grandad, and when the time comes to say goodbye, but try to encourage daily routines at home and at school so as to teach them that death is part of life.
Remember this is a difficult time for you too so try not to take it all on yourself, utilise the support of your family and friends. You may also find it helpful to contact bereavement support organisations such as Rainbows at www.rainbowsireland.com or The Irish Hospice Foundation at www.hospice-foundation.ie who will be able to provide support for your children in the coming months if you wish.
Dear Alyson,
My wife recently died following a very short illness. She was only 28 years old, and we were very close. We did everything together and now my life without her is unbearable. But I can’t seem to cry. Is this normal? My family and friends are very supportive but I get little comfort from their support.
To lose a partner at any age, let alone someone so young whose death is so untimely, is one of the most challenging events you will experience through your lifetime, and nobody unless they‘ve been through it themselves, can fully understand your loss.
Try and understand that you are coming to terms with many issues all at the one time. You have to think and plan as to how you actually cope on a day to day basis from getting up in the morning, to going back to work, to doing the shopping and all the other things your wife used to do in the house. Maybe your wife looked after all the finances and pension plans and suddenly you have to think of all these extra responsibilities facing you. The fact is you probably can not allow yourself to cry, because you fear that to do so might mean you would let yourself go, and fall apart. But in time when you feel it is safe to cry you will do so. This may happen when you are least expecting it and when it does it will begin to release your anxieties and pain. In the meantime you should not feel guilty about not being able to cry.
Growing through grief may be a long and exhausting task so try to utilise the support from friends and family. While you may feel it is of little comfort to you now, be patient and understanding with yourself as you try to adjust to your loss. Your family and friends will be there when you are ready. In the meantime it may help to talk to someone outside of this circle perhaps a counsellor, Your GP is usually a good source to recommend a good counsellor in your area or a local support group who will be able to guide you through what you are feeling at present.
Do remember every where around you there are others who are coping with loss; do not be afraid to reach out to them and ask them how they are coping? Some people can experience significant difficulties as they try adjusting to life without someone they love, so it is important for you to keep in contact with your doctor who will be able to monitor your physical and emotional well-being. The loss of someone so close is traumatic and has changed your life forever, this does not mean they are gone from your life, your treasured memories within your heart will provide a great source of comfort and strength as you begin to heal.
Be vulnerable, share the pain with those who offer support. Use photos and mementos to help you mourn, not to live in the past. Allow yourself to grieve in a way that suits you. Be prepared to grow within changes in your life. Realise that any new death will bring up feelings about your past losses.
I can recommend a new website which you can visit at www.widowedyoung.ie Widowed Young Ireland is a recently formed group of young men and women in Ireland who have been widowed at a young age. It offers young widows and widowers a chance to learn to live with their loss amongst friends, and provides support and encouragement.
In the last 2 days of my mother’s life we were instructed not to feed my mother drinks or food. I feel guilty since, thinking that we could have caused her suffering . Could we not have given her something nourishing like a small bowl of soup that would have been easily digested?
To lose a parent at any stage of life, be it as a child or an adult, is a life changing experience. It is difficult to describe the intensity of the pain you feel for the death of someone close, who in many cases has influenced not only your life, but the type of person you have become. Grief does not follow any stages and is unpredictable. It can bring with it many emotions including guilt, this is normal.
The last days and hours of life are very difficult for you to sit and watch someone you love slip away. While you may have felt helpless, be assured your presence alone would have been a great source of comfort to your Mum. It is human nature that makes us feel we should be doing something, be it fixing pillows, straightening bedclothes, or trying to give food and drinks. When someone begins to die their bodies weaken and are not able to tolerate or digest food and fluids. What happens is, if anything is given, for example fluids, they cannot be absorbed in the normal way and will pool in the chest area, only contributing to distress and discomfort. So by not giving anything to your Mum in those last days meant you were in fact preventing this occurring. So be assured there was nothing more you could have done and in no way did you harm your Mum. Try to acknowledge your loss now, and know that those overwhelming feelings will lesson with time. Do ask for help and share your feelings with your loved ones, who may have similar concerns as you.